On Wednesday we saw Jenny at Neuro in Seattle, and we discussed Lily's growing frustration. Really it's more than frustration; it's anger. Sometimes she will scream, kick, and scratch and not for a goal like attention or food because she will continue without an audience and nothing that you offer her helps her emotional state. It has made it difficult to go places with her because she can go into this for hours, and there is nothing we can do to help her. Keppra (one of her seizure meds) can cause behavioral problems, so we are lowering the Keppra to see if the behavioral/frustration issues decrease. This, of course, could bring about some nasty seizures, so it's a gamble, but isn't it always. Adjusting meds over and over is just a a part of the process. I'm very hopeful that we'll see some improvement because Lily's quality of life is greatly diminished by feeling so frustrated all of the time.
We're also starting a probiotic in the morning to see if we can stave off a lot of the illnesses she's getting. I'm crossing my fingers, and not walking under ladders, and keeping my hat off the bed, and not going near any black cats...hahaha...we really need these changes to help!!!!
Glad to know someone knows what I'm talking about, and it certainly is RAGE! It's maddening! We blamed it on illness for so long, but when she got better, we had nothing left but Keppra. Now I know what to call it! ;)
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